My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path. I'm learning how to enjoy whatever path I'm on.

Because of how quickly my disability benefits went through, I have had a lot of people call or email me to ask for advice for their own disability applications. Occasionally, the request comes via social media. In the comments section, most people are polite and sympathetic. Not helpful, but sympathetic. Others just start blasting away. It reminded me of some of my pet peeves when it comes to people's reactions when they hear of anyone applying for government assistance.

1. Social Security benefits are not an entitlement. We've paid into our Social Security all the while we've been working. It's more of a forced saving's account where our employer matches the amount we put in. The benefits we receive are based on how long we've worked and how much money we made, in other words, how much money we, and our employer, contributed.

2.Social Security Disability Insurance benefits are not an entitlement. SSDI is the insurance we all carry while we work and contribute each month. When I finally applied for SSDI, the caseworker who helped me, asked why I had waited and not applied right after I had to quit my job. I fired back, "BECAUSE I WANTED TO TRY AND WORK". He gave me a funny look and said, "That's sort of like getting into a car accident and not filing an insurance claim."

3. Bureaucracy is not a bad word. We put a lot of extra negative meaning into this word when it really just means "the officials, employees, and people who run government departments and offices, or similar officers and employees who manage the details of a large business." (Cambridge Dictionary) People complain and say the federal government is too big. Then they complain when they wait at social security for hours and say "the government is inefficient and there's too much bureaucracy". Maybe there should be more bureaucrats - as in a few more staff people - to help run the offices.

4. No, I don't have to whine or cry or "work the system". There's an attitude out there that makes two statements - 1) lots and lots of people are applying for disability who don't need it and they're applying because they're lazy and don't want to work - and 2) The "system" wants to find any reason to deny your disability benefits because this is a huge entitlement program (see above) so.. if you want to have your disability approved (because YOUR reason is valid even if no one else's is) you're going to have to work the system. Whine a lot. Go to the emergency room for little things when you don't have to. Those last two sentences? A disability lawyer told me that.

What if, okay I know I'm radical, but what if instead of assuming many people are committing fraud by applying for disability just because they're lazy and don't want to work, and what if instead of assuming Social Security doesn't want to help us, what if we take the time to find out what they need from us to make their job easier? What if we went in with the understanding that the staff is overworked and probably underpaid? What if we were nice to them and asked how their day was going? What if we thanked them every time they did anything for us?

Okay, I know it's frustrating. Maddening at times. Our daughter had Social Security benefits for the first year of her life. I tried to handle everything by phone because I didn't want to take our immunity compromised infant daughter around a lot of people. Handling these matters by phone is enough to make anyone angry. There are times when getting frustrated and angry is inevitable and appropriate. We don't have to start out expecting it to be that way.

Here, again, are the guidelines I was given by a friend, a former Social Security disability worker, before I applied:

1) Do everything in person at your local Social Security office whenever possible. If you call and make an appointment, you won't have a long wait. Apply in person, not over the computer, not over the phone. If you make an appointment, be on time.

2) Do your best to be pleasant and not whine. We all have bad days, but trying to be pleasant helps us, too. Social Security caseworkers get yelled at and whined at a lot. They'll appreciate someone who is pleasant.

3) Gather your medical records yourself and organize them in a binder. Ask your doctor(s) for a letter of support. Ask your employer for a letter of support explaining why you are not able to do your job properly, even with the accommodations you tried (list them). If part of the issue is fatigue, write your own note to explain the difference between your fatigue and being just very, very tired. Say how much activity it takes to exhaust you. (example: when I taught a class for one hour a day, 5 days a week, by the end of the 2nd week, I was falling 5 or 6 times a day. At the end of the 3rd week, I had an ER visit).

4) When you bring in your records and if you need to bring addition documentation later, ask for a receipt.

5) Thank your caseworker! Go in with the attitude that they are on your side and your job is to help make their job easier.. and therefore, quicker.

Will this guarantee you will get your benefits approved? Of course not.

Why gather your own records when they will gather them for you? Yes, you can sign the permission paper so they can request your records. These caseworkers have lots of clients. Imagine the challenge of sorting through all the records which come to the office and getting them in the proper files. Do the caseworkers have the time, energy, and investment to make sure everything is done quickly? If you gather it yourself, it's all in one place and you know what you have. Take it in when you apply.

But they get paid to organize your files. Well, yeah, but with just a little bit of effort, you can speed up the process for your application.

If your benefits are denied, then you will want to talk with a disability lawyer. They get paid a percentage of your retroactive pay, so being organized for the lawyer speeds things up, too.

If you call up a lawyer and they tell you to whine and go to the emergency room for little things, hang up on them and find another one. Take a deep breath. Smile. You might have to swear first, but then smile.